I spent a couple of hours last night watching videos on YouTube about Caregiving and Dementia. I’m afraid that if I don’t educate myself on a regular basis, I fall into the trap that many others do that all ‘memory disorders’ are similar. They are not. There are actually 46 different types. Forty-six!
I’m not going into the whys and wherefores of plaques and tangles – it’s all over the internet, which is a technological blessing because generations before us had to navigate in the dark, relying on scant information from books and personal experience, and incomplete knowledge from doctors. I’m not a medical professional and for the most part avoid detailed clinical explanations, but suffice it to say ‘forewarned, forearmed.’ I gloss over the gory parts and take what I need.
Have you ever glanced at a shelf of books, or a list of titles or internet search results and found one that figuratively leaps off the page? Well, that’s what happened to me last night. I found a series of lectures by Tanis J. Ferman, PhD on YouTube entitled, “Behavioral Challenges in Dementia with Lewy Bodies“, and if I have heard the information Dr. Ferman gave before, I must have been looking out the window because I missed the one word that put everything I’d experienced with Mom since 2011 in order.
The word was, “fluctuation.”
Dementia with Lewy Bodies, the second most common dementia which claims about 25 percent of cases, is not a progressive loss of memory such as what occurs in Alzheimer’s. It is a condition that fluctuates – one where the symptoms are good one day and bad the next. It’s unpredictable. It progresses like the stock market does when you don’t see any real earnings, but the direction keeps hinting that you might win or lose it all. You just never know for sure and so you, as a caregiver, have these incredible ups and downs. Sometimes I feel as though I’ve just gotten to sleep and suddenly there’s this big light in my face waking me up. And then I’m allowed to go back to sleep for a reprieve before it all starts again.
Something that Dr. Ferman said was so important that I had to rewind the video to hear it a second time: “There are some studies that show that if caregivers are educated about the disease, if they learn about what to expect – how maybe to cope with some issues, there’s a reduction in caregiver burnout, there is an improvement in caregiver health. And not only that…when they looked at the patients themselves, the patients’ mood improved. So educating the caregiver actually had an impact on the patient!”
Wow! I took notes as though I was attending a lecture at college. There it was: A full description of the challenges and concrete suggestions for overcoming them almost exclusively without medication!
By understanding that people with DLB can remember you one day, but not the next; that they can walk unaided and wake up after a nap and forget how to move; that they can hallucinate one minute, and then act perfectly rational right after. Some have hearing and vision problems that cannot be corrected with eyeglasses or aids and so they can’t see the food on their plate or hear what you say even if you shout. It’s perfectly normal for them to stop eating for time only to pick up a fork and consume food as if there’s no tomorrow. Or sleep days away with very little awake time other than to eat.
My son, like others, thought Mom was manipulative and playing some sort of game early on, but I knew she was not. What she was doing was driving me crazy. The 1940 movie, “Gaslight” comes to mind where a husband dims the lights in a house but convinces his wife that she is only imagining it. Last night’s YouTube session set me straight.
They say that you should use few words, slow down and not explain things in depth to a person suffering with Dementia. This is why Mom has trouble with television – there is too much going on. But after my sleeping beauty spent two days in bed, she stayed up to watch her favorite documentary until far into the night. It was entitled, “The Men Who Built America.” Go figure.